Worse Than Cancer? Getting Needed Care by Robert A. Duke

Waking Up Dying

Caregiving When There Is

No Tomorrow

by Robert A. Duke

Good Enough Publishing, 2014

Paperback; 318 pages; $17.95

ISBN-10: 0975328611

ISBN-13: 978-0975328613

It started with a scream.

In 2009, Shearlean Duke was on safari in Kenya with her husband, Robert Duke, when white-hot pain seared her leg and traveled up to her breast and arm. It soon abated, but she thought it was snakebite. It was much worse.

Back in Bellingham, several medical tests revealed a malignant stage IV glioblastoma located just above her left ear. That kind of cancer is one of the most deadly, and she could die any day, a year at the most. With Robert’s care, brain surgery, chemotherapy, radiation, medications and, above all, Shearlean’s force of will, she lived for another 18 months, exceeding all expectations. She died at 5:50 a.m., Feb. 2, 2011, in their home in Bellingham.

Robert Duke has written a caregiver’s story of the worst possible ordeal: caring for Shearlean, suffering from severe and, ultimately fatal brain cancer, while trying to navigate a healthcare system often indifferent to her immediate needs. Duke’s book is both a warning and a testament to the unimaginable emotional toll of soaring hopes, crashing fears, frustration, exhaustion, and, transcendently, the deep, all-consuming love in caring for a dying beloved.

He will talk about and read from the book at a Village Books event at 7 p.m., July 31.

Bob Schober: When did you know you were going to write this book?

Robert Duke: July 2012. I couldn’t get it started because every time I sat down to start memories of our experience kept interfering. I just kept procrastinating for 18 months and realized I wouldn’t get anything done if I didn’t write that book. So I set myself a deadline of Jan. 2014 to get it published. I missed by six weeks.

What was the biggest challenge for you in writing the book?

One of the earliest challenges was how much detail I had forgotten about. When I started writing, fortunately I saved everything but I had to look up a lot of stuff because the memory of it all just disappeared. She had taken a trip to visit her sister after the surgery and I had completely forgotten that. I thought I had a slam dunk book. I had written 22 updates to tell people about her condition, and I was under the delusion that all I had to do was write an introduction, transition and conclusion. I started again and looked at what the story is to tell. I had to create the context, and that was difficult. It became a writer’s problem. Too much material, and I couldn’t control it. But I’ve always been good at gathering data, validating and verifying things. I didn’t publish the evidence per se that I encountered, it’s in my files, but I was able to write about what I experienced.

What purpose did you have in mind in writing it?

I had a couple. I wanted to write a male caregiver’s point of view about caregiving. In my superficial research I found only one other book by a male caregiver, and I thought it important to give a male perspective. But there’s a lot more men giving care than I realized. I also wanted to document, in the full sense of that word, the problems we encountered. Everyone throughout the time we experienced those problems denied that those problems even existed. Since I was good at gathering data, validating and verifying things, I thought I could gather evidence. I didn’t publish the evidence per se, it’s in a file, but I was able to write about what I had evidence of. And since then, when I met especially healthcare providers and talk about problems patients encounter, they say, “What?” No one has been able to give concise and precise explanation of a healthcare problem.

For example, if I say we needed something, they’d say file an appeal. Because they all say there’s an appeal process to handle these kind of problems. But I’d say, “But she’s dying today. She’s got aphasia, she’s got cancer, she doesn’t have time to file an appeal. Appeals take time. Appealing isn’t the solution to the problem. The system has to act now. Not tomorrow, not next week, not next month. She’s dying, her care is urgent, we don’t have time.

Did you run into that regularly?

Yes, it’s a chronic problem. In my estimation, by my definition, the general healthcare system is geared to chronic conditions, which is what most of us are dealing with. When someone is dying, that’s an acute condition, consequently whatever treatment they need they have to have it now. Or they’ll die now. So the system isn’t set up for long term acute care. Through medical science, we now all take a long time to die, but the system hasn’t caught up. For the 531 days Shearlean lived after the diagnosis, she spent all of eight days in acute care, four for surgery and four in an ICU, and all the rest time she spent in general care, which wasn’t adequate to her needs. So I thought that was a terrible situation.

Since then, when you’ve talked to healthcare providers and explain what you went through, what’s been the reaction?

“Not us. We don’t have that problem.”

Ever feel like screaming at someone during that time?

I usually felt sorry for the people I was dealing with. I blamed the system, very seldom the individual. In the book I tell about women I made cry, and there were several, and I always felt bad about that. But I couldn’t fight the system without fighting the individual. It’s always some poor, helpless individual, they’re as helpless as I was, we’re just on opposite sides of the counter. The system is the enemy, but it’s nowhere to be fought.

What advice for those not yet caretaking a loved one would you give?

Preparation. People need to prepare instead of waiting until you’re struck by this. All of a sudden, you go from neutral to a 100 miles an hour, and everything needs to be done yesterday. If you’re unprepared, you start off at a disadvantage. I think most people see it coming and are so fearful that they can’t do anything about it. But I’m not going to presume that if I had forewarning, I would have done anything more than anyone else has done. People have healthcare plans but haven’t really used them and don’t know how to solve a problem that arose with one. That’s their first line of defense, to use their insurance to care for themselves. And the healthcare system doesn’t help by telling them anything they can do, so it’s the blind leading the blind.

What did you learn about yourself you didn’t know before?

I learned I was more of a caring person than I ever realized. I was proud of it, that I could live up to what was needed of me.

What’s your view of the healthcare system in Bellingham? All but 4 days were spent in Bellingham for her treatments.

Probably superior to other systems but still so lacking in essential care that patients need.